Cari was 17 when she first started noticing pain when she pee’d. “It just felt like this burning painful sensation every time I went. After a while, I started feeling it all the time. I was constantly running to the bathroom, in agonizing pain, unable to sleep. It was horrible.”
Many doctors, and many tests later, Cari finally learned that she had interstitial cystitis, also known as painful bladder syndrome. “It was a relief to finally know what it was, although learning to treat it was difficult. Everything I tried was hit or miss and I still never knew when or why I would get IC flare-ups.”
After a while of experimenting with her diet, she finally found some relief. “I learned the foods that would irritate my body, and made a huge effort to completely revamp the way I eat”, she said. “I also have learned to give my body rest when it needs it. So many people never even knew that I had IC because I’d keep pushing myself to be ‘normal’ but when you’re feeling that way, you really need to give your body the rest it needs. It makes a world of difference.”
Cari’s story isn’t uncommon. The Interstitial Cystitis Foundation reports that as many as 3-8 million women and 1-4 million men may suffer from IC in the United States alone. These numbers may be even higher since they don’t take into account children. Many adults with IC say that their symptoms started when they were very young.
What Is Interstitial Cystitis?
Interstitial Cystitis, also known as painful bladder syndrome, is a condition that affects the bladder, pelvic area, and urinary tract. Patients with IC often feel pelvic or bladder pain, pressure on the bladder, and pain when urinating. Many patients also feel the need to empty their bladders very frequently, even if it’s only a small amount.
Interstitial Cystitis is a chronic condition that cannot be cured, although there are several ways to treat it. Patients who have IC may experience different symptoms, from mild to severe, at different times. Many patients find that their symptoms come and go. The symptoms may become more severe at certain times, like during menstruation, and may vary in severity and frequency throughout a patient’s life. This can vary from patient to patient, with one patient experiencing symptoms every day and another experiencing them only once in a while.
Symptoms Of Interstitial Cystitis
People with IC often feel a building pressure as their bladder fills with urine.
Pain is the most common symptom of IC and can range from mild, dull aches and cramps, to severe burning or stinging pain. People with painful bladder syndrome may feel discomfort when their bladder fills, pain when urinating, general pelvic pain, or pain while having sexual intercourse.
Some people mistakenly associate this pain with a urinary tract infection (UTI). However, a urine culture test can quickly determine if there is bacteria or infection present in the urine and should be able to rule out UTIs as a cause of the pain.
People with IC typically have to urinate often, even when their bladder is not completely full. They may feel the need to empty their bladder both during the day and at night, as many as 60 times within a 24 hour period.
Along with the frequent need to go, people with IC also feel an intense need to go right now. Some people may experience this on an ongoing basis, even when they have just emptied their bladder.
Despite symptoms of frequency and urgency, IC typically does not cause urinary leakage as with other conditions that have similar symptoms (like OAB or Urge Incontinence). If you are experiencing UI, talk to your doctor about other conditions that may be affecting you.
Who Is At Risk?
Anyone – men, women, or children, can get interstitial cystitis. However, women are most likely to get IC – about 90% of people with IC are women. The risk of getting IC increases as you get older.
What Causes IC?
While it’s unclear what causes IC, there are many theories:
The lining of your bladder causes irritation.
Your bladder is sensitive to certain food and beverages.
Abnormal substances in your urine
Pelvic floor muscle dysfunction
Spinal cord trauma
How Is IC Diagnosed?
Because so many symptoms of IC are also present with other conditions, it can be very difficult to diagnose. There is also no test that can diagnose the condition. Instead, doctors must rule out other possibilities, such as UTIs, kidney stones, sexually transmitted diseases, bladder cancer inflamed prostate (in men), or endometriosis (in women).
Your doctor will likely perform a number of tests which may include a urine culture, a biopsy of your bladder tissue, cystoscopy, a pelvic exam, or a prostate exam, among other things. Only when other conditions have been ruled out will a doctor make a diagnosis of interstitial cystitis.
What Are The Treatment Options For IC?
There is no cure for IC, but symptoms can be controlled by a number of lifestyle changes or other medications or procedures.
Treatment for IC varies for every person – what works for one person may not work for another, and it may take time to find out what combination of lifestyle changes or other treatments work best for each patient. The main goal with the treatment of iC is to manage symptoms so that they do not negatively impact a person’s life.
Behavioral changes are typically the first treatment option tried by IC patients, and in many cases, are very effective. Learning to manage triggers, such as certain foods or too much stress can help to keep symptoms at bay. Some of these lifestyle changes are:
Interstitial Cystitis Diet. Just like some foods irritate the bladder in patients with incontinence, there are foods that can trigger a flareup of interstitial cystitis. Acidic foods, such as citrus or tomatoes, spicy foods, coffee and tea, and carbonated beverages are all foods that may irritate your bladder when you have IC. A common approach to determine if one of these foods is contributing to your symptoms is to follow a strict IC diet for a couple of weeks. Then, slowly add back one food at a time to see if you notice a reaction.
This process takes time. It’s important to note that everyone is different – not all of these foods will cause irritation. But many people with IC do notice a big improvement in their symptoms when following an IC-specific diet. You can find more information about the foods that are allowed, and what to avoid here.
Bladder training. Retraining your bladder to be able to hold urine for longer is a common treatment for those experiencing frequency and urgency – whether it’s due to IC or OAB.
Stop smoking. Cigarettes irritate the bladder and can trigger symptoms of IC. In addition, long-term smoking can result in a smoker’s cough, which over time can place increased pressure on the pelvic floor and cause additional pain.
Wear loose clothing. Loose clothing can prevent too much pressure on the bladder.
Reduce stress. Stress is a common trigger of IC symptoms, so make an effort to eliminate it as much as you can. Find ways to relax, meditate, or talk with a professional to help cope with any stress you may be experiencing.
Exercise. Exercise is important for your overall health, but it also can help keep your pelvic floor strong. Exercise is also a great way to reduce stress. Because high-impact workouts or heavy lifting can place pressure on your pelvic floor, stick with low-impact exercises, such as walking, and talk with a physical therapist who can help you create a workout program that will avoid triggering your IC symptoms.
Acupuncture. Studies have suggested that acupuncture may be an effective way to ease IC/bladder pain syndrome.
Physical Therapy or Medication
If lifestyle changes are not effective, your doctor may suggest the next line of treatment, which includes physical therapy and/or medication.
Physical Therapy. A physical therapist trained in pelvic floor health is a good option for many people with IC. Because IC can cause the pelvic floor to become tense, it’s important to learn how to relax the muscles which can ease pain and allow the muscles to work properly. This is where a PT comes in. Physical therapy can help manually relax and lengthen tight muscles that may be triggering pain.
It’s important to note that strengthening exercises, like Kegels, which are often prescribed to incontinence patients are not recommended for IC patients. Tightening muscles that are already too tense can make symptoms worse.
Medications. There are several medications that can treat symptoms of IC. Some work to control bladder spasms, some help to rebuild the tissue lining of the bladder, and still others are used to reduce nighttime trips to the bathroom.
If Lifestyle or medications don’t work, your doctor may try one of the following:
Removal Of Ulcers
Sometimes IC patients have ulcers on their bladder which can trigger IC flareups. Your doctor may remove these ulcers by burning/cauterizing them or injecting them with steroids.
Bladder Stretching, Or Hydrodistention
Stretching the bladder is sometimes an effective treatment for IC symptoms, although the results last for only a few months and the process may need to be repeated. It’s not clear why this procedure helps, but it’s thought that it may temporarily block pain signals sent by nerves in the bladder.
Neuromodulation, a common treatment for overactive bladder, works to calm the bladder by sending electrical pulses through your sacral or tibial nerve to help control your bladder and pelvic floor. It’s a simple outpatient procedure that can be done in your doctor’s office.
Also used as a treatment for overactive bladder, injecting botox into the bladder is thought to block the nerves that transmit pain signals from the bladder. Botox is not FDA approved to treat IC.
Cyclosporine is an autoimmune drug that has been used with some success in IC patients, although caution should be used as there are some side effects with this medication and it can reduce your body’s ability to fight other diseases.
While not a common treatment, and often the last resort, surgery may be considered for patients with very severe cases of IC who have not responded to other treatments.
Impact On Quality Of Life
Interstitial Cystitis can be a debilitating condition because of the pain and discomfort it causes. But it can also greatly affect the quality of life of those who suffer from it.
Interstitial Cystitis can limit your social life and force you to miss out on the things you enjoy. It has been associated with a decrease in work productivity, emotional changes, poor sleep, sexual dysfunction, and mobility issues.
Learning to effectively manage symptoms, reducing stress, and finding support from others who live with IC, can help patients cope with this condition.